MS Essentials 19

Transcription

MS Essentials 19

M20.335_Essentials 19_artwork
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Third edition
October 2011
19
MS
Essentials
For people living with MS
This publication is available in large print (22 point) and audio CD
Call 020 8438 0799 or email [email protected]
Muscle
spasms and
stiffness
Muscle spasms or stiffness are common symptoms,
affecting at least 20 per cent of people with MS at some
time.1 Spasms and stiffness affect people differently and
can vary over time. Mild stiffness in the muscles can aid
balance and mobility for some, but more severe stiffness
or spasms can be tiring, frustrating and, for some, painful.
There are a number of treatments available, and health care
professionals can help you find the best approach to treat
or manage your symptoms. Many people find relief by
identifying and avoiding things that trigger spasms. Working
with health care professionals to plan stretching exercises,
physiotherapy or drug treatments can also be useful when
tackling these difficult symptoms.
Through the booklet, we refer to many organisations that
can help with particular issues – just look for the i . Their
details are listed in the back of the booklet in the ‘Useful
organisations’ section (page 21).
Contents
02 What do we mean by spasms,
stiffness and ‘spasticity’?
03 The effects of spasms and
stiffness
04 What causes spasms and
stiffness?
06 Assessing your symptoms
07 Finding suitable treatments
08 Physiotherapy and exercises
11 Aids and equipment
12 Drug treatments
17 Electrical stimulation therapies
18 Complementary therapies
18 Surgery for severe spasms
19 Further information
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What do we
mean by
spasms, stiffness
and ‘spasticity’?
Page 2
Muscles are involved in every movement you make. They get
longer and shorter to move and hold the body. If MS causes
nerve damage that affects muscle movements, there can
be a wide range of problems, affecting different muscles in
different ways.
Spasticity
Some of the terminology used to describe these various
problems can be confusing. Health professionals sometimes
talk about ‘spasticity’ when describing the stiffness that you
may experience. Spasticity means there is an increase in ‘muscle
tone’. In other words, when the muscle is moved, there is more
resistance to this movement than there normally would be.
Muscles feel more rigid.
Stiffness
Increased tone can mean muscles are slow to relax, and this
can cause stiffness. Depending on the muscles affected, this
stiffness can make it difficult to perform delicate movements
with the hands and fingers, or make larger movements difficult,
which can affect walking, for example.
Spasms
When affected muscles stretch, spasticity may also cause them
to jerk in an uncontrolled way. This is one kind of muscle ‘spasm’
that people with MS can experience. If muscles jerk repeatedly,
this is known as ‘clonus’ – for example when a foot taps
repetitively on the floor.
Muscle spasms and stiffness © MS Society 10/11
‘As with many of the
symptoms caused by
MS, the precise impact
will be different for
everyone.’
2
Some people with MS experience other spasms – sudden
involuntary movements that can make the arms or legs move in
different ways. These can occur even without the muscle being
stretched. They are generally described as one of the following:
•
‘Flexor spasms’ cause a limb to bend upwards towards your body.
•
‘Extensor spasms’ cause the limb to shoot out away from
the body.
•
‘Adductor spasms’ most commonly cause the legs to come
together, making it difficult to separate the thighs. They can
also pull the arm into the side of the chest, making it difficult
to move the arm.
All of these can vary in their severity and, as with many of the
symptoms caused by MS, the precise impact will be different
for everyone.
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The effects of
spasms and
stiffness
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Spasms and stiffness can range from a minor annoyance to
problems that make daily life and activities uncomfortable, painful
and difficult. For some people, muscle stiffness even has a positive
effect. If your leg muscles are weak, for example, a certain amount
of stiffness can help keep the legs rigid and stable for walking
and standing. If this is the case, it may be better to monitor the
situation to prevent further complications, rather than try to
remove the stiffness completely.
However, for others, severe ongoing stiffness or frequent spasms
can disrupt mobility and have a significant impact on day-to-day
life. Extremely strong spasms can jerk the body quite dramatically,
causing limbs to move with considerable force, or be held in
uncomfortable positions.
Night-time
Spasms sometimes cause particular problems at night. The
‘jerking’ they can cause to the body – often the legs – might
wake you or your partner several times a night. Not getting
a good night’s sleep can make living with MS more difficult,
possibly making other symptoms worse, such as fatigue and
weakness. But there are things you might like to try to lessen
this problem, which we will discuss later in this booklet.
Explaining the issues
If you experience spasms and stiffness, you may also notice
changes from month to month, day to day, or even at different
times during the same day. This can make it a surprising,
awkward and sometimes embarrassing issue to deal with.
Living with spasms and stiffness can be frustrating for everyone
involved, but understanding the issues can help everyone deal
with them. This booklet might be helpful if you are explaining
your symptoms to others, and anyone can call the MS Helpline
(see page 19). Treatments are likely to work better if they are
understood by you and those around you.
Even if you feel your spasms or stiffness are not major problems
for you, you may still want to make your doctor or MS nurse
aware of the issue. Left untreated, spasms and stiffness can
result in problematic pressure on the skin or problems with
posture. With suitable care, this can be minimised and knock-on
effects, such as aching joints and pressure sores, can be avoided.
‘Living with spasms
and stiffness can
be frustrating for
everyone involved,
but understanding
the issues can help
everyone deal
with them.’
3
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Pain
Both muscle spasms and stiffness can be painful, though they
are not always. You might feel the dull ache of stiff muscles, or
a sharper pain if they spasm. Muscle problems can also interfere
with good posture, causing back pain, for example. If pain is an
issue for you, let your doctor, MS nurse or physiotherapist know.
Pain is an ‘invisible symptom’ and people will not be aware of it –
or be able to help you manage it – unless you explain it to them.
This is true for health professionals as well as family members,
friends or colleagues. There are treatments that can help control
your spasticity and pain. Some drug treatments can help with both.
For more information about managing pain in MS, see the
MS Society publication Pain and sensory symptoms.
What causes
spasms and
stiffness?
The exact causes are not fully understood, but both stiffness and
spasms can be linked to the damage that MS causes to nerve
fibres in the brain and spinal cord (the central nervous system).2, 3
Message relay
The movement of the body is controlled by a combination of
messages passing back and forth, rather like a relay race.
One part of this relay has messages running between the brain
and the spinal cord – the other, between the spinal cord and
the muscles themselves.
All these messages travel along nerve pathways made of many
nerve cells known as ‘motor neurones’. These motor neurones
are the nerves that control the muscles.
Motor neurones
As the diagram on the right shows, the nerve pathway connecting
the brain and spinal cord is made of ‘upper motor neurones’.
The pathway between the spinal cord and muscles is made
of ‘lower motor neurones’.
4
Messages passing through the upper motor neurones regulate
the activities of the lower motor neurones. This ensures smooth
working of the muscles, good coordination and posture.
For muscles to work properly, messages need to pass smoothly
across both the upper and lower motor neurones.
This section continues on page 6.
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The messages that control our muscles
Lower motor
neurones pass
messages between
the spinal cord
and muscles
Upper motor neurones
pass messages between
the brain and the spinal
cord, to regulate messages
in the lower motor neurones
and smooth out the
workings of the muscles
Brain
Spinal cord
Muscles
Muscles
5
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Damage to the upper motor neurones
MS can damage the protective layer (called ‘myelin’) around the
fibres of the upper motor neurones. This results in distorted
messages between the brain and spinal cord. When this happens,
these upper motor neurones can no longer regulate messages
to the lower motor neurones. The lower motor neurones can then
become overactive and hyper-sensitive, causing stiffness or
spasms in the muscles.
Damage in different areas of the brain or spinal cord can cause
different types of stiffness and spasms experienced in MS.3 Symptoms
can come and go, but may become more constant over time.
Other causes
As well as these causes found in the brain and spinal cord, there can
also be physical changes to the muscles and tendons themselves
such as shortening (contractures), which may add to the problem.2
Treatments, therefore, may involve several approaches in order to
tackle these different causes.
Assessing
your
symptoms
The effects of spasms and stiffness vary widely, so treatment
needs to match your own individual needs and abilities. In order
to do this, health care professionals should assess your spasms
or stiffness, taking into account the nature of your symptoms,
possible trigger factors that make them worse and – very
importantly – the impact they have on your daily life.
To treat or not to treat
It is always worth considering if treating muscle stiffness is actually
the best option. Stiffness in the legs, for example, might help,
if weakness or balance problems would otherwise make it difficult
for you to get about. For those with milder stiffness or spasms,
treatments might cause more inconvenience than benefits. As with
many MS symptoms, it can be a case of weighing up the pros and
cons and discussing these with your doctor or physiotherapist.
6
Measuring stiffness and spasms
When making an assessment, health care professionals may use
a scoring system to rate how stiffness and spasms affect you.
If you have a stiff thigh muscle in your leg, for example, they
may ask you to lie down whilst they bend the leg at the knee.
A perfectly relaxed muscle should not resist very much. However,
if they feel resistance in the bend, this is a sign of stiffness and
they give this a score – the greater the resistance, the higher the
number. In a similar way, a score can be given for the number
and intensity of muscle spasms each day. Recording these scores
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before and after treatment allows you to monitor what is effective
and what is not, and to make adjustments if you need to.
A full assessment
Assessments should not rely just on the kind of physical
examination described previously.3 Everyday activities, including
walking, sitting and lying down can all have an effect on stiffness
and spasms, so it can be useful to explain if there are particular
times of the day, or particular circumstances when your symptoms
are better or worse. This might reveal the most appropriate
treatments for you. You might want to keep a record of your own
stiffness or spasms during a particular week or month, to help
expose any particular patterns when discussing it with your doctor.
Ongoing assessment
Assessments should be an ongoing process, not an isolated first step
– your symptoms and circumstances can change and so the best
treatments for you may also need to change. And you might need
to try different approaches before finding what works best for you.
Finding
suitable
treatments
Set realistic goals
At every stage of treatment, it is important to set goals – what
results can be expected from a treatment and do these benefits
outweigh the inconvenience and possible side effects? A
physiotherapist, doctor or MS nurse can help ensure treatments
have minimal side effects.
Triggers
‘Investigating potential
triggers that cause
or make your spasms or
stiffness worse can help
you to find solutions.’
•
an increase in your body temperature (perhaps because of
a fever or excessive exercise)
•
infections (for example, bladder or chest infections)
•
if you are experiencing a relapse
•
skin irritation (including pressure sores)
•
a full bladder
•
constipation, causing a full bowel
•
overly tight strapping or clothes
Investigating potential triggers that cause or make your spasms
or stiffness worse can help you to find solutions. If you know
what is causing a problem, then this can help you deal with it.
For example, something as simple as loosening tight clothing might
provide some relief. The following are some of the more common
triggers that you and your doctor or MS nurse might consider: 3
7
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•
a fractured bone (perhaps caused by a fall)
•
problems with posture
•
emotional stress
These triggers can also work the other way, as a ‘warning
system’. If your muscle spasms or stiffness get worse, this can
alert you that there is something else wrong that needs to be
dealt with.
Treatments for different types of spasms
and stiffness
If treating suspected triggers does not provide adequate relief,
there may be further investigation and treatments that could help.
In deciding which treatments are most likely to work best, health
care professionals will look at whether your spasms or stiffness
are ‘focal’ (related to particular muscles), or ‘generalised’ (more
widespread, affecting many muscles). You may have both, so
a combination of therapies is sometimes needed.
Physiotherapy and exercises can help treat both types, but
certain drug treatments are better suited to either ‘focal’ or
‘generalised’ spasms or stiffness. The following sections look
in more detail at different treatments.
Physiotherapy
and exercises
8
Movement, through physiotherapy and exercises, is an important
way to manage muscle stiffness, whether it is mild or severe.2
Whatever exercise or stretching plans you agree with your
physiotherapist, doctor or MS nurse, they need to be ones that
you can continue to do yourself at home, either on your own
or with help from family or carers. Therapies like this are most
effective when they are done regularly.4, 5 Always consult a health
care professional before starting new exercise plans or trying out
different therapies – it makes sense to know that a therapy will
not be dangerous, or do more harm than good.
If you are unable to actively move the affected part of your body,
it can be useful if a carer helps with what is known as ‘passive
movement’ – where the arm or leg is moved by someone else,
to stretch the muscle and keep the joint supple. A physiotherapist
can help you and your carers learn appropriate techniques.
They can also review your home exercise programme at least
once a year to make sure it is still appropriate for you.
Range-of-motion exercises
‘Range-of-motion’ describes the amount of movement you have
in each joint. Good range of motion describes a joint which can
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move very widely. Poor range of motion is where a joint can only
move to a limited extent. Exercises designed to help you keep
maximum movement can bring benefits in two ways: they may
reduce muscle stiffness and can also prevent knock-on problems
like stiff joints from lack of use.3 In severe cases, joints can become
locked in one position, leading to postural and hygiene problems.
A physiotherapist can show you active or passive exercises that
match your abilities and help you avoid these problems. If you have
muscle stiffness, it is important to begin these kinds of exercises
as soon as possible, to minimise the risk of problems later.3
Stretching
Along with range-of-motion exercises, stretching muscles can also
help prevent long-term complications. When muscles are working
normally, they stretch and contract, getting longer and shorter as the
body moves about. Stiff or spasming muscles can be stuck for long
periods of time in a shortened state. In the long term, this can lead to
pain in the muscles, or in the tendons that connect them to the bone.
Daily stretching to lengthen affected muscles can help avoid this.3
The MS Society has produced an exercise DVD, Exercising with
MS, which features a number of stretches for people with MS.
You can watch the routines on the MS Society website or on YouTube
(search ‘exercising with MS’), or contact the UK Information team
to order a copy of the DVD.
Before trying any of the exercises in the DVD, you should speak
to your doctor to make sure that they are safe for you to do.
Strengthening
If muscles do not get much use – perhaps because of stiffness,
spasms, or other MS symptoms – they will get weaker over time.
This can make daily activities and moving about more difficult.
Strengthening exercises, sometimes involving lifting or moving
weights, can help prevent this.3, 5
Light pressure or stroking
Sometimes, applying gentle pressure or lightly stroking a muscle
can help get more out of range-of-motion and stretching exercises.
Touching the muscle like this may calm the message pathways and
relax the muscle, allowing you to stretch or move a little further.3
9
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Relaxation and breathing techniques
Some people find that relaxation techniques and deep breathing,
such as those used in yoga or t’ai chi, for example, help them
relax when exercising. These kinds of techniques can be learned
with books or tapes, or through classes. If you join a class, you
might want to explain your needs to the teacher beforehand so
that they are aware of any adjustments you might want. It is
important to take any exercise at a pace that suits you.
Relaxation tapes and CDs are available from the MS Society.
Contact the UK Information Team.
Keeping cool
Not everyone with MS is affected by heat, but some people are
particularly sensitive to it. Hot weather, an over-heated room and
exercise can all make MS symptoms worse. This is a temporary
effect – when the body cools down again, symptoms return to
the level they were before.
If you are sensitive to heat, keeping cool during or shortly before
exercise may help you exercise for longer, or more strenuously,
without bringing on heat-related symptoms. This could be done
with ice drinks, cooling garments or with regular breaks to
prevent overheating.
Research showing benefits for these cooling techniques is not
conclusive, and they may not help everyone, but they are unlikely
to be harmful.4 With the support of a health professional, you may
find a cooling method that works for you.
•
Cooling and warming muscles
Lowering the body’s temperature, with cold baths or cooling
garments, might also reduce some people’s muscle stiffness
temporarily. Applying cold packs or cold towels directly to
affected muscles may give temporary relief for spasms or
stiffness.5 Again, research is not conclusive, but you may
find such cooling techniques help your symptoms.
10
In contrast, some people with MS find that cool temperatures
make their spasms or stiffness worse.4 For these people,
exercising in a warm swimming pool may help with stretching
and relaxing muscles.5
•
Take care
Be careful with hot and cold therapies to avoid burning your skin.
When applying cold directly to the skin, or when using cooling
garments or cold water to cool the body, take care not to damage
your skin. MS can cause changes to the way you experience
temperature, distorting the feeling that would normally tell you
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when something is too hot or too cold. It’s a good idea to consult
your doctor, MS nurse or physiotherapist if you are thinking of
using such techniques.
Stretching ‘locked’ muscles
Braces and splints are sometimes used to hold a muscle in place
for longer periods of time. This can be helpful if a muscle would
otherwise be ‘locked’ in one position, which could make daily
activities difficult, or cause problems in the long term.
For example, if stiff muscles mean that a leg is bent at the knee,
a splint may help stretch out the contracted, shortened muscles
so that the leg can be straightened. This might make it easier
to stand, as well as stretching the muscle and moving the joint to
avoid them ‘seizing up’. Standing frames can serve a similar
purpose, allowing someone to stretch the muscles by standing,
even if normally this would be difficult or impossible.
There is a range of equipment which might be helpful – ask a
physiotherapist, nurse or occupational therapist if you think
these techniques might benefit you.
Sitting and lying
How you sit or lie down can also help with managing spasms
and stiffness, and with preventing muscles from getting locked
in a shortened position in the long term. Some people find that
specially designed beds and chairs help them find a suitable
posture. There are also special supports available to help
people stay in position in bed or in chairs. The Disabled Living
Foundation has information about this kind of equipment i . Others
benefit from simply placing pillows or cushions where needed.
Correct positioning and support for the body when sitting or
lying down can also help you avoid your skin rubbing and
causing sores, and prevent aches and pains that can come
from poor posture.
Staying mobile
Some drug treatments for spasms and stiffness can cause muscle
weakness, so you may find that certain aids, such as sticks and
walking frames, can help you stay mobile.
Some people with MS experience ‘drop foot’ – where the
muscles cannot smoothly control the foot’s actions when walking.
There are a number of drop foot aids which might help, including
carbon-fibre splints, elasticated systems (for example, ‘Foot-up’
and ‘Musmate’) and functional electrical stimulation (FES)
(see page 17).
Aids and
equipment
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If you and your health care team think you might benefit from one
of these aids, it’s important to keep them informed about how you
get on with it. Different aids suit different people, so if something is
uncomfortable, or not quite right, there might be a more suitable
alternative, or an adjustment that can be made.
Drug
treatments
Physiotherapy and exercise are sometimes not enough on their
own. Drug treatments can often help, especially when combined
with physiotherapy.
Treating individual muscles – focal spasms
and stiffness
Sometimes, treatments can be targeted at particular muscles,
or groups of muscles, that are affected. These treatments are
known as ‘neuromuscular blocks’ (sometimes also called
‘neurolytic blocks’). The drug is injected directly into the chosen
muscle, leaving it in a relaxed, lengthened position. An effective
neuromuscular block will stop the muscle being stiff and prevent
spasms, but it will also make the muscle unable to contract and
work and as a result cause weakness. For this reason, these
treatments may not be suitable for everyone, but can be helpful
if spasms or stiffness are making daily activities or mobility very
difficult. Neuromuscular blocks need to be combined with
physiotherapy to give the maximum relief.2, 3 The table on
page 13 shows the neuromuscular blocks commonly used.
When many muscles are affected – generalised
spasms and stiffness
12
Spasms and stiffness do not always affect individual muscles.
To manage more generalised problems, other drugs may help.
With these drugs, it can take some time to find the best choice for
you – one that is effective without causing intolerable side effects.
A combination of drugs may work, but it is always best to start with
a single drug to see how that works first. The dose you take might
then be increased over time, or combined with others, if the expected
results are not seen at first. If you need to make changes to the doses
or drugs you are taking, it is vital that you always discuss this with
your doctor or MS nurse. Drugs should never be stopped suddenly.
It is important to remember that when taking any of these drugs
you may notice weakness. This could be a side effect or might be
because reducing stiffness has left muscles less able to support you.
These drugs should not be seen as an answer in themselves, but
in combination with movement and physiotherapy they can be
beneficial. The table on pages 14 and 15 describes some of the
drugs used to manage generalised MS spasms and stiffness.
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How quickly does
it start to work?
How long does
it last?
Side effects and
precautions
Botulinum toxin
(sometimes
known
as ‘botox’) 4
Between 12 hours
and 7 days after
the injection.
Usually 3 to 4
months. Treatment
can be repeated
after 3 months.
You should expect
to notice weakness
in the treated muscle.
A few people develop
a resistance to one
type of botulinum
toxin. Using the
smallest dose that is
still effective can help
reduce this.
Alcohol or
phenol
injection 2, 3, 6
Immediate.
The injection
permanently
destroys nerve
fibres in the
injected muscle.
But some nerves
partially re-grow,
so the effects may
wear off after
several weeks or
months. Injections
can be repeated
if needed.
You should expect
to notice weakness
in the treated muscle.
Neuromuscular blocks for treating spasms and stiffness in specific muscles
13
14
How is it taken?
How does it work?
Side effects and precautions
Baclofen (Lioresal, Lyflex) 3
Tablet or liquid
A muscle relaxant that works in the central nervous
system. It can reduce the number of spasms and levels
of muscle stiffness.
It may cause drowsiness, nausea, dry
mouth and dizziness.
Tizanidine (Zanaflex) 3
Tablet
A muscle relaxant that works in the central nervous
system. It can reduce stiffness and spasms and may
be particularly useful to treat painful night-time spasms.
Because its effects last for only 3-6 hours, it can be
best used around specific times when relief from
symptoms is most important, for example at bedtime.
It may cause drowsiness, fatigue, dry mouth
and dizziness. Rarely, it can cause hallucinations.
You should be carefully monitored for any
effects on your liver, as it can cause problems
for some.
Gabapentin (Neurontin)
Tablet
An anticonvulsant drug that calms overactive messages
in the central nervous system that might cause spasms.
This drug is not used as commonly as baclofen or
tizanidine to treat spasms and stiffness in MS, but it can
be a suitable option for some.
It may cause drowsiness, fatigue and dizziness.
Dantrolene sodium (Dantrium) 3
Tablet
This drug works directly on muscles, reducing their
ability to contract.
Side effects are common. They include
drowsiness, fatigue, dizziness, nausea, speech
difficulty and lack of coordination. You should
be carefully monitored for any effects on your
liver, as it can cause problems for some.
Diazepam 3 and clonazepam 6
Both tablet
Diazepam is a muscle relaxant that works in the central
nervous system. It can reduce stiffness and spasms.
Because of side effects at higher doses, it may be
more useful at night. Diazepam is no longer widely
used to treat MS spasms and stiffness, but can help
some people if other treatments have not worked.
Clonazepam is similar but may be particularly effective
for night time spasms.
They may cause drowsiness and weakness
but if taken at bedtime to reduce night spasms
this is not usually a problem. Diazepam and
clonazepam are ‘benzodiazepines’ – a type of
drug that can be addictive with long-term use,
so should not be taken for too long. Your
doctor can advise you on this.
Baclofen pump (also called
intrathecal baclofen’) 3, 5
Baclofen is supplied continuously to the fluid
around the spinal cord. A pump that is surgically
implanted near the waistline controls the dose.
This system is known as ‘intrathecal’ injection.
For those with more severe spasms or stiffness, who
do not gain adequate benefit from tablet medications,
this can be helpful. By delivering the drug directly to
the area in which it works, it can be more effective.
Because of this, doses can be kept lower, keeping
side effects to a minimum. Fitting the pump, adjusting
the doses and refilling it should always be done by
fully trained professionals.
Side effects are rare unless the dose is
too high. Potential risks include infection,
movement of the device and the wrong dose
being given (overdose or underdose). Newer
models of pump mean that pump failure
is now rare.
Phenol injection (also called
‘intrathecal phenol’) 2
Phenol is injected directly into the fluid around
the spinal cord (‘intrathecally’).
It can be helpful for some people, to treat very
severe spasms that do not respond to physiotherapy
and other drug treatments. Phenol is a permanent
treatment which destroys the nerves that control
sensation and movement, so by injecting it at a certain
point around the spinal cord, it can stop spasms in the
lower parts of the body. The effects of an injection can
sometimes wear off but can be repeated if necessary.
Phenol can affect any nerve in the lower
spinal cord, so it can cause the legs, bladder
and bowel to become very weak. It is only
used where a person already has limited
control of these parts of their body.
Sativex (also known as nabiximols)
Sativex is taken by spraying it under the tongue
or to the inside of the cheek.
Sativex is a cannabis extract which works on the
cannabinoid receptors in the brain and spinal cord.
It is licensed in MS as an add on therapy for those
people whose spasticity and spasms have not
responded to the other available drugs.7
Side effects can include dizziness, sleepiness
and feelings of light headedness. Occasionally
the spray can cause soreness in the mouth
so it is important to change the spray site
regularly.
Drug treatments for generalised spasms and stiffness
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Sativex
Sativex is an oral spray that contains chemicals known as
‘cannabinoids’, which are extracted from cannabis plants.
It is currently the only treatment that has been licensed
specifically for managing spasticity in people with MS.
Clinical trials of Sativex have found that it can be of some benefit
to people who have not responded to other drug treatments.
In one major trial, 573 people were given Sativex for four weeks.
Those who found it helped them (241 people) either continued
to take Sativex or were switched to a placebo for a further 12
weeks. Of those who continued with the Sativex, 74 per cent
reported an improvement in their spasticity score of 30 per cent
or more, compared to 51 per cent of the people who were given
the placebo.
In general, these self-reported or ‘subjective’ improvements were
greater than those measured on the trials using standardised,
‘objective’ tests. Side effects included dizziness, sleepiness and
feelings of intoxication.7
Access to Sativex
Sativex is licensed as a ‘second line’ treatment for spasticity
in MS. This means that it can only be prescribed if other drug
treatments have not worked. It can only be prescribed by
a specialist, for example a neurologist.
At the moment, Sativex has not been assessed by NICE, which
sets out good practice for NHS health care in England and Wales.
This means that it is up to individual primary care trusts, health
boards or health trusts to decide whether it can be prescribed.
This has created a ‘postcode lottery’, with some areas refusing
to prescribe it.
16
The MS Society believes that people with MS should have access
to proven treatments, no matter where they live in the UK. Even
though it has not been recommended by NICE, you can still make
a case for access to Sativex if your neurologist believes it will
help you. The Policy and Campaigns team at the MS Society
has produced a guide to help people to do this, available to
download from the MS Society website. Alternatively, contact
the UK Information Team.
25/10/11
Electrical
stimulation
therapies
14:54
Page 17
Used in combination with the treatments above, some people
find electrical stimulation therapies useful. These therapies use
electrical impulses to stimulate the muscles and the nerve fibres
affected by spasticity. However, like all approaches to managing
spasms and stiffness, they don’t work for everyone.
Access to these kinds of therapies varies around the country.
Your doctor, physiotherapist or MS nurse can refer you to an
appropriate service, if there is one near you, where a health
professional trained in using this equipment can discuss the
options with you.
Functional electrical stimulation – FES
A device which stimulates the muscles and nerve fibres of
the ankle and foot, called functional electrical stimulation
(often known as ‘FES’), can help combat ‘drop foot’ – where
the muscles cannot smoothly control the foot’s actions during
walking. FES pads are usually attached to the surface of the
skin to electrically trigger the required muscles as you walk.
This may be a helpful addition to physiotherapy for some.2
NICE, the organisation that assesses treatments for the NHS
in England and Wales, says that FES is safe enough and works
well enough to be used on the NHS.8
Contact the National Clinical FES Centre, which developed
the device, for more information i . For more about accessing
FES services, see www.mssociety.org.uk/FES
‘TENS is based on
principles similar to
those of acupuncture –
that stimulation of the
nerves can affect the
way pain signals get
through to the brain,
potentially easing
the pain that is felt.’
This is another form of electrical stimulation that is applied
through pads attached to the surface of the skin. TENS machines
may help control the pain that some people experience with
muscle spasms.5, 9 TENS is based on principles similar to those
of acupuncture – that stimulation of the nerves can affect the way
pain signals get through to the brain, potentially easing the pain
that is felt. It may be particularly useful for managing the pain
of spasms at night, especially if these spasms disrupt sleep.5
However, as with all treatments for pain, it does not suit everyone
and some people have reported skin irritation and some
discomfort, rather than improvements.10
TENS (transcutaneous electrical nerve
stimulation)
17
25/10/11
14:54
Complementary
therapies
Page 18
Some people say that complementary therapies such as
acupuncture, chiropractic, herbalism, magnetic stimulation,
massage and yoga can help them. Some of these may be
available through the NHS, though you may be asked to
contribute towards costs for certain services. Others will need
to be paid for privately. Before beginning any complementary
therapy, it is a good idea to consult your doctor. Some therapies
may interact with medications, or might even do more harm
than good.
If you do decide to use a complementary therapy, wherever
possible use practitioners who are registered with a nationally
recognised body. There’s more information in the MS Society
publication Complementary and alternative medicine. Many MS
therapy centres offer complementary therapies. Contact Multiple
Sclerosis National Therapy Centres or MS Therapy Centres
Scotland for your nearest centre. i
Surgery for
severe spasms
Occasionally, surgery can help restore movement and posture,
or can be used to relieve severe, ongoing spasms.
‘Orthopaedic surgery’ corrects problems with bones and muscles.
This kind of surgery can sometimes restore the position of feet,
ankles and hips if contractures have developed. For someone who
is mobile, this may help them with walking. For those spending
a lot of time sitting or lying down, it might help prevent further
complications, such as pressure sores. However, orthopaedic
surgery is more likely to bring benefits if stiffness is well managed
– with physiotherapy or drug treatments, for example – to guard
against similar problems coming back in the future.3
In rare circumstances, when other treatments have not relieved
severe spasms and stiffness, operations on the spinal cord
might be considered. This kind of ‘neurosurgery’, however,
is not usually necessary.
18
25/10/11
Further
information
UK Information Team
020 8438 0799
[email protected]
National offices
– see back cover
www.mssociety.org.uk
14:54
Page 19
Read more
Our free booklets help explain MS, look at its practical and
emotional effects, and help you find your own ways to manage
life with MS. Titles are available in large print, audio format and
a number of languages.
We can help you find and borrow other books, research articles
and DVDs about living with MS. Search online or call the UK
Information Team.
Find out more online
Get the latest on research, campaigns and MS news. Chat online
with our message boards and Facebook. Follow us on Twitter,
see the MS community at Flickr and watch us on YouTube.
Children and teenagers can find out more and link up through
our YoungMS site: www.youngms.org.uk
Join us
Receive local and national magazines and newsletters, and get
involved locally and nationally. Be as involved as you like. Just
by being a member you strengthen the voice of all people with
MS, and help us continue our vital work. Join online, or call
020 8438 0759 or your national office.
Get in touch
The freephone MS Helpline offers confidential emotional support
and information for anyone affected by MS, including family, friends
and carers. Information is available in over 150 languages through
an interpreter service. 0808 800 8000 (weekdays 9am-9pm)
or [email protected]
Contact the UK Information Team or your national office if you
have any questions about MS.
Near you
Our volunteers run over 300 local branches and support groups.
They provide information about MS and local services, and a chance
to meet others affected by MS and take part in a range of activities.
In many parts of the country, you can pick up our booklets at
MS Society Info Points. Larger information centres – including
ones in our national offices in London, Belfast, Cardiff and
Edinburgh (Newbridge) – can help you with information about
MS and services in your area.
Or come along to our local and national events and learn more about
MS from expert care professionals, researchers and other people
with the condition. Find out more online or call your national office.
19
25/10/11
14:54
Page 20
Further reading
These books are all
available to borrow from
the MS Society Library.
Call 020 8438 0799
or email
[email protected].
Managing the symptoms of multiple sclerosis by
Randall T. Schapiro. Published by Demos Medical Publishing
(Fifth edition 2007), ISBN: 978-1-932603-36-1. This book
includes diagrams for exercises that may help with
managing spasticity.
Exercises for people with MS by Liz Betts. Published by,
and available from, the MS Trust (2004), ISBN: 1-904156-05-3.
This book includes exercises and information about positioning
that might be helpful in managing spasms. Available online
at www.mstrust.org.uk
Yoga and multiple sclerosis by Loren M. Fishman and
Eric L. Small. Published by Demos Medical Publishing (2007),
ISBN: 1-932603-17-4. Includes some poses aimed at improving
spasticity.
20
25/10/11
14:54
Page 21
Useful organisations
Disabled Living Foundation
Provides information and advice to disabled people
and others who use equipment or assistive technologies
to enhance their independence.
380-384 Harrow Road
London W9 2HU
Helpline 0845 130 9177 (weekdays, 10am-4pm)
Textphone 020 7432 8009
www.dlf.org.uk
Multiple Sclerosis National Therapy Centres
A group of self-help centres offering a wide range
of drug-free symptom management therapies.
PO Box 126
Whitchurch
Shropshire SY14 7WL
Telephone 0845 367 0977
www.msntc.org
MS Therapy Centres Scotland
For details of MS therapy centres in Scotland.
Duncrievie House
College Road
Methven
Perth PH1 3PB
Telephone 01738 840 357
www.mstherapycentres.org.uk
National Clinical FES Centre
For information about FES (functional electrical stimulation).
Department of Medical Physics and Biomedical Engineering
Salisbury District Hospital
Salisbury
Wiltshire SP2 8BJ
Telephone 01722 429 065
www.salisburyfes.com
21
25/10/11
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Page 22
References
Find these references at
www.mssociety.org.uk/
library or call the UK
Information Team on
020 8438 0799. There
may be a charge for
the full article.
1 National Institute for Clinical Excellence (2003) NICE Clinical
Guideline 8. Multiple Sclerosis: management of multiple sclerosis
in primary and secondary care. London, NICE.
2 Thompson, A. J. et al. (2005) Clinical management of spasticity.
Journal of Neurology, Neurosurgery and Psychiatry, 76, 459-63.
3 Haselkorn, J. K. and Loomis, S. (2005) Multiple sclerosis and
spasticity. Physical Medicine and Rehabilitation
Clinics of North America, 16, 467-81.
4 Brown, T. R. and Kraft, G. H. (2005) Exercise and rehabilitation
for individuals with multiple sclerosis. Physical Medicine and
Rehabilitation Clinics of North America, 16, 513-55.
5 Multiple Sclerosis Council for Clinical Practice Guidelines (2003)
Spasticity management in multiple sclerosis. Evidence-based
management strategies for spasticity treatment in multiple
sclerosis. Teaneck, NJ, Consortium of Multiple Sclerosis Centres.
6 Jarrett, L. and Stevenson, V. L. (2006) Spasticity Management.
A practical multidisciplinary guide. Abingdon, Informa Healthcare.
7 Medicines and Healthcare products Regulatory Agency (2010)
Sativex oromucosal spray – public assessment report. London,
MHRA.
8 National Institute for Health and Clinical Excellence (2009)
Understanding NICE guidance. Treating drop foot using electrical
stimulation. London, NICE.
9 Miller, L. et al. (2007) The effects of transcutaneous electrical
nerve stimulation (TENS) on spasticity in Multiple Sclerosis.
Multiple Sclerosis, 13, 527-33.
10 Carroll, D. et al. (2000) Transcutaneous electrical nerve stimulation
(TENS) for chronic pain. The Cochrane Database of Systematic
Reviews 2000, Issue 4, Art. No: CD003222.
22
25/10/11
14:54
Page 23
Authors and contributors
Written by James Bailey
Edited by Jude Burke
With thanks to Cath Heynes, Dr Paul Mattison, Irene Nicol,
Monica Poole, Dr Stephen Smith, Dr Valerie Stevenson and all
the people affected by MS who contributed to this publication.
Disclaimer: We have made every effort to ensure that information
in this publication is correct. We do not accept liability for any
errors or omissions, and policy and practice may change.
Seek advice from the sources listed.
Suggestions for improvement in future editions are welcomed.
Please send them to [email protected].
© Multiple Sclerosis Society, 2011
First edition, June 2006
Third edition, October 2011
This title will be reviewed within two years of publication.
23
25/10/11
14:54
Page 24
MS Society
Multiple sclerosis (MS) is the most common disabling neurological
disorder affecting young adults and we estimate that around
100,000 people in the UK have MS. MS is the result of damage
to myelin – the protective sheath surrounding nerve fibres of the
central nervous system. This damage interferes with messages
between the brain and other parts of the body.
For some people, MS is characterised by periods of relapse
and remission while, for others, it has a progressive pattern.
For everyone, it makes life unpredictable.
The MS Society is the UK’s largest charity dedicated to supporting
everyone whose life is touched by MS. We provide a freephone
MS Helpline; grants for home adaptations, respite care and mobility
aids, education and training, support for specialist MS nurses; and
a wide range of information.
Local branches cater for people of all ages and interests and are
run by people with direct experience of MS.
The MS Society also funds around 80 vital MS research projects
in the UK.
Membership is open to people with MS, their families, carers,
friends and supporters. You can help the work of the MS Society by:
•
•
•
becoming a member
making a donation
offering your time as a volunteer
Contact information
MS National Centre
372 Edgware Road
London NW2 6ND
Telephone 020 8438 0700
[email protected]
MS Society Scotland
National Office, Ratho Park
88 Glasgow Road
Ratho Station
Newbridge EH28 8PP
Telephone 0131 335 4050
[email protected]
MS Society Northern Ireland
The Resource Centre
34 Annadale Avenue
Belfast BT7 3JJ
Telephone 028 9080 2802
[email protected]
MS Society Cymru
Temple Court
Cathedral Road
Cardiff CF11 9HA
Telephone 029 2078 6676
[email protected]
National MS Helpline
Freephone 0808 800 8000
(weekdays 9am-9pm)
www.mssociety.org.uk
Multiple Sclerosis Society.
Registered charity
nos 1139257 / SC041990.
Registered as a limited
company in England and
Wales 07451571.
ES19/1011

MS Essentials 19

Transcription

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